Part one: Finding Meaning
How do you find meaning?
That is how I asked the question, and the participants gave their answers. There are many ways to learn about how a person finds meaning. You can look at how they spend their life and examine their work. You can also have conversations with them about different matters and infer from what they say about their frames of references and about what they find meaningful or relevant.
I chose to ask how the person finds meaning simply, like that.
There is no set way to think about the meaning of meaning. But people still consider this concept relevant to them, or at least many did. I wanted to ensure that people who did not think about concepts like meaning were still included in this narrative and reconstruction. And I was afraid that if I asked the question in any other way, I would be bringing out more of my own framework of meaning than anything about the others’ thoughts.
Participants were in different places in their experiences and reflections. Some felt they had little access to purpose and meaning, as if it had all been ripped off from them or that life was nothing but chaos. Some also struggled in trying to reconcile any notion of fairness they had about life. It did not make sense for some that they, out of the many, were the ones who were suffering.
Some were still searching for peace and considered meaning to be a work in progress.
There was also a group of participants who reached beyond this life and found meaning there. They were the ones who found meaning in religion.
Others could not find refuge in faith and, instead, worked up something else. Among them, there was a group who sought knowledge and understanding in the working of humans, whether that is in science or the humanities. For some, this life was their only shot.
Many individuals found meaning in relationships and connections—those who had children or families connected with them to make memories. People also found communities where they felt a sense of belonging. Cancer became a foundation for a community of support and advocacy groups. The friends or family of cancer survivors became a reason for some individuals to carry on.
Those who were fortunate enough to return to work found meaning in the spaces where they showed their talents. Those who reconstructed their identities around their experience with cancer also found meaning in serving others, especially the ones who struggle with a similar illness. For them, meaning had become about service, and service gave them a purpose.
Not everyone, however, thought about their lives within a framework of meaning. Some simply lived their life and did not feel they needed to have an elaborate philosophy.
I relate to the many experiences of searching for meaning or purpose. The existential fear of death has provoked in me many questions about life and its meanings all at once. At some point, I wished that there would be an answer that I could reach out and grab with my hands. I could not, however, find that one answer. So I asked the thirty-nine people about their experience with meaning because I did not personally know the answer.
I am still on the search.
Not Finding the Meaning
At the center of the painting, a man is kneeling next to the lips of a statue of a sphinx. The man is wearing a cloth robe that covers most of his body except the left side of his chest and his left arm. He leans with his ears toward the sphinx, as if listening to it whisper. But the sphinx’s lips are sealed.
The attentiveness in the man’s posture tells that the sphinx was anything but generous with wisdom.
The man is standing on sand that extends, along with old ruins, into the distance. Only the head of the sphinx can be seen; the body is buried in the sand, as are the pillars and ruins. Next to the man is a stick he probably used to help him trudge through the sand so he could question the sphinx. In the right corner are a skull and a rectangular structure that looks like a tomb.
It was December of 2016, two weeks after I was diagnosed with Stage 4 lung cancer. I was in Boston, seeking a second opinion from Harvard and wandering through the Museum of Fine Art looking for meaning. I was staring at the painting of the Questioner of the Sphinx (by Elihu Vedder, 1836–1923).
Although my medical questions had all been answered, I left the city, like the questioner of the sphinx, with only more existential questions. The most urgent question I had was about the meaning of my life, especially now that it appeared to have been shortened.
How do other people find meaning?
I know the question is problematic, but it is relevant. Problematic because we may not have two people agreeing on the meaning of the word “meaning”; and relevant because we use the reference to meaning every day as if it is essential to our existence.
When I asked the thirty-nine participants in my study about meaning, they referred to something. The words meant something to them.
They had answers. Even those who said they didn’t have any answers had answers.
I struggled with the question, and I knew I was not alone in my struggle.
Donna, a thirty-seven-year-old woman, framed the issue in her way. She understood the meaning in the sense of purpose, and cancer made her rethink purpose on an individual level, as a person. Donna had lost what she once thought was her purpose in life. “How to find meaning? Hmm. That’s a tough one,” Donna remarked. “Cancer has forced me to focus and reflect on what’s my purpose in life.”
Donna had a sense of what having a purpose had been like. “I have a 9-year-old niece, and I had always thought that my purpose in life was to have a child of my own.” But when Donna was diagnosed with cancer, that purpose was no longer attainable. “So, it’s as if my purpose in life was ripped away from me,” she said.
She has to be on the anticancer medication the rest of her life, and with that, she cannot biologically have a child of her own because the medicine would cause congenital abnormalities in her offspring. Therefore, even if she were to live another twenty years, it would not change the fact that she would not have children of her own. So now Donna is trying to find a purpose somewhere else, but she does not yet know what that is.
Stories of finding meaning in the illness are known to survivors. But unless the person experiences the epiphany themselves, all those stories are just words.
There was Nancy, a thirty-six-year-old woman, for instance. She rejected the notion that she found meaning anywhere in her experience with cancer. “I don’t think I have found meaning; I don’t think I have,” she responded. “I think if anything, this just reinforced to me the idea that life is just chaos and that there is no purpose to things.”
Nancy perceived that she’d had a significant derailing of her life path. Although many people came to console by bringing their reasonings, she could not find condolences in their words. Nancy heard people say, “Just let go,” and “Everything happens for a reason.” But these did not fit with how she saw things.
You know, no! No! There are horrible, horrible things that happen in this world, absolutely atrocious, way worse than what has happened to me. And they didn’t happen for a reason.
Nancy could not relate to an understanding that finds a reason for everything that happens. She could not let go of calling things what they are. Things can be ugly, and that sucks. Life sucks at times and for no reason. So Nancy could not find meaning. “I don’t think I found it—I haven’t found any meaning in it. If anything, it’s that life is very fleeting.”
Nancy was not alone in her position. Sandra had a similar experience, although she was more open to one day finding meaning, as others do. Sandra explained, “I read about these people who say that now is the time to make memories and live because you don’t know what’s going to happen.” However, she did not easily relate.
I’m not there yet. I’m still kind of battling the sadness and feel like the things that I had in my life have been taken away from me. So I’m trying to get to where maybe I can eventually see that life is special and precious. And I’ve had a scare, so enjoy things now because you don’t know what the future holds. But I’m just not there yet; working on it.
Sandra saw that some people do come to terms with this, yet this acceptance was not yet attainable for her. Sandra hoped it would come with time, although when she looked inward, she realized she was still battling an endless sadness. Maybe someday, she hoped, she would get to a place where she could find peace.
For some, the question of fairness still haunted. Fairness is another notion that is relevant to a conceptualization of meaning, or to at least having a framework that makes things make sense.
Just like Sandra, who thought things had been taken away from her, David, a forty-two-year-old man, felt the magnitude of the loss and believed it was not fair. David explained,
I feel it’s unfair. I don’t understand. I’m a Catholic, and I used to go to church a lot. I don’t understand how God could do this to me. Why would He give me this? What have I done? Why do I deserve this?
Cancer has shaken David’s faith, but he still keeps on with it. He explains, “I stopped praying for a while, and just now, I am coming more to terms with it. I started praying again. But I still feel it’s unfair, and I don’t understand why this happened to my family and me.”
To David, it was simply unfair. At least at first, he could not make sense of it. It was not what he had expected, and that wasn’t right. Still, he did what he could to keep holding on to something.
Similarly, Christine, a forty-five-year-old female, continued to grapple with the question of why me, and when I asked about finding meaning, she said, “I don’t find meaning. I don’t know. I say stuff like why. Why me? All that stuff. I will look for meaning. I haven’t found it yet.”
Just like David, who at times comes closer to accepting yet goes back to asking the same question, so did John. He also considered his search for meaning to be an unfinished task.
John, a thirty-two-year-old, thought his purpose was to promote a healthy diet so people could live disease free. But in the middle of giving one of his talks to people about how diet prevents cancer, he could not use his voice anymore. He was diagnosed with lung cancer. Now, he is back to searching for meaning, and he explains,
I’m still trying to figure it out. It’s still—I guess it’s a work in progress, and it changes. It’s constantly changing. You know, before, I thought my purpose was to help people get healthy through nutrition by using my technique of meal prepping and making it easy for them, making it convenient.
His illness tested the limits of his frame of reference. Does diet prevent cancer? If it doesn’t, then what was he doing? What was his life about?
What cancer did not test in him, however, was the desire to do things with others and for others. He explains, “Now, I’m starting to think maybe that it’s helping people with cancer and helping people who are already ill get better through nutrition. So I don’t know.” He still insists on helping people to get better nutrition. Maybe nutrition does not completely prevent cancer, but maybe it can help with healing. One thing that has not changed for him is finding meaning in helping people.
It is an unanswered question. In response to my questions, Nancy said, later in our conversation,
The only meaning that I could come up with is that life is precious, and I’m trying to enjoy it as much as I can. We should experience it while we’re here and be present in it and try to live a life that makes the world a better place before you leave it.
Life is precious, and even though the world can be an ugly place, it can also be made better. Life is an unfinished project, and similarly, finding meaning is an uncompleted task.
That is what I learned about struggling to find meaning, and that is what the sphinx in Boston had not told me.
The Meaning Is There All Around
I shared with a friend about my plan to write this book. He was skeptical. Maybe I shared with him because I knew he would be skeptical. I needed a voice of doubt and wisdom. I shared that one of my most important tasks with this book was to explore how people grapple with meaning. I also reflected on my position in regard to the matter.
I was concerned that in writing a book about others’ struggle with meaning, I may actually be writing a book about my own. Maybe that is why I had doubts and wanted his skepticism. I worried that the existential restlessness of others that I was exploring was simply a reflection of my struggles with the matter, which I’d had even before the illness.
He was concerned that these questions had been tackled for centuries by philosophy and religion. So what was there to add? He also worried because of my position on the matters of faith and religion. How can one person step out of their frame of reference to truthfully represent that of others?
I explained that while I was raised Muslim, I am now agnostic, and I have taken an open position to learn about the values brought to the conversation by all frames of references. I also realize that there are elaborate philosophies and major religions out there that have presented all-encompassing frameworks for thinking about life as a whole. And I confess that I come here with skepticism about the possibility of maintaining a religious view that is coherent and consistent with modern views of the world.
However, I accept that people are entitled to their religious position and their spiritual aspirations. The individual can look at the list of options and choose for themselves. Or they can choose to not look and simply take in whatever comes their way. That does not trouble me in any way. I am only curious about how the person of faith experiences this illness. I was interested in hearing their stories and how those stories came to be. I was curious to understand and was open to the differences.
I present here the views of those who referenced faith or reflected on their relationship with religion.
I was privileged to learn about Kim’s view of life. Kim’s frame of reference included the notion that everyone has their struggle. Her system of thought explains that to her well, and she finds that makes sense. She shared with me,
One of our Catholic beliefs is that everyone has a cross to bear. So, I’ve looked at it as this happens to be the one that I’ve been asked to bear. I also offer up my suffering to Jesus. That’s another Catholic belief. We’re taught that we are offering up our suffering or sharing in Jesus’s suffering through our suffering.
Kim is mindful of the suffering she is experiencing, and she is not taught to deny it.
Her suffering is emotional, as she explained. “I’ve physically been OK. Now, I’ve gone through some treatments that were not super fun but nothing debilitating. But the suffering has been more emotional or psychological.” For her, that counts as suffering, the same as any physical pain or bodily struggle. Her suffering is also not wasted. It is instead part of her journey on a higher path. She explained that “suffering is like a path to holiness.”
Also, within her framework, her suffering is like a test. Kim said, “God is testing me, testing my faith. So one of the things I pray for is that. Other than praying for healing, I pray that my faith remains strong because it’s times like these that your faith can really falter.” Within this framework, maintaining faith is how to pass the test.
I see how suffering can be framed neutrally, “We all suffer, and this is my fair share,” or even positively as “an offer to Jesus and as an opportunity.” Also—and here is the concern of the believer—“as a test, the person could fail.” Failing the test by losing faith is the worst of it all. Kim explained it this way: “The suffering for me is not the physical, because I have been physically fine, but is the emotional suffering and, more importantly, the questioning.”
It is the doubt that sneaks into the heart of the person who suffers that is the real suffering, Kim added. “The questioning of why did this happen? How could God let this happen to me? I thought I did all the right things, and still, this happened to me, and the unfairness of it all.” However, Kim recognizes that she is not the only one suffering. She goes to a support group and sees others who are struggling. She says,
There are a lot of much younger patients than I am and I just think, “Gosh, I thought I was young,” and then I hear about all these other people who are much younger.
The real suffering is in the question that does not find answers. But Kim does not let those concerns take her all the way, which she reminds herself.
But then again, I have always to trust that there’s a plan for me, and it’s out of my control, so I’m not in charge. I always have to just go back to that, and if suffering happens to be part of the plan, then I have no choice but to accept it.
For Kim, the individual is not in charge. It is God who is in charge. God is in charge, and He has a plan.
Kim was fifty years old when we had our conversation, and at that time, she’d had her illness for seven months. She was married, with two college-age children. She had been a stay-at-home mom for most of the past eighteen years, although she had recently been considering reentering the workforce.
Born in the United States, Kim had spent most of her childhood in the Philippines. Her husband, about three years older, had been the primary breadwinner of the family for the last eighteen years, since their second child had been born. That’s when she had decided she was better off staying at home and raising her family than working outside the home.
In the months leading up to the diagnosis, she had been settling into a new routine as a recent empty nester; they had just sent their youngest off to his freshman year at college. Once her kids had gone away to college, she started looking for jobs. But being out of the job market for so long made it harder to find one. Then she accepted a job offer only a few weeks before her diagnosis of advanced and inoperable lung cancer. She would be working at a Catholic school in the area. Her efforts to find a job had come to fruition, but the diagnosis put a damper on that job offer. To her, it meant that God had a different plan.
For Amy, also, God has the plans and gives meaning in life. For her, that matter is clear. She said, “There is God; there is divine intervention.” Amy was sixty-three years old when we had our conversation, and she had been diagnosed for about four and a half years. Amy sold commercial real estate, and her husband was a surgeon when the couple had decided to take early retirement. They had a weekend house in the countryside that became their home. A few years before her diagnosis, a few lung nodules had been found on an x-ray. She was having regular imaging studies to make sure the nodules were not malignant. After about a year and a half of keeping an eye on the spots, during which she’d kept hearing that was nothing to worry about, her surgeon husband had asked, “Why are you subjecting yourself to so much radiation, because that can cause cancer, you know?” She started to worry, “and I just acquiesced and decided to stop going for scans.”
Then she had a car accident. She explains that, in her mind, it was “divine intervention about ten months after I’d had my last scan.” Amy had been driving on twisty country roads in a light rain. When a car approached from the opposite direction, she seemed to have overcompensated and hit a rock to the side. Amy’s car flipped over and was totaled. Amy was taken to a trauma center not far away, where they scanned her and then said, “You have a broken back and lung cancer.”
Amy is Jewish, and since she was a teenager, she has been part of a synagogue. She believes in God and divine intervention. She believes in one god with many interpretations. Amy says she always wished to find, wherever she was, a place of worship that was “open to all religions and is a spiritual church. And that’s the kind of place I would like to be.”
Amy explains, “If I didn’t have that car accident, I probably would have been diagnosed later with Stage 4 (she was first diagnosed with Stage 3b and then progressed to 4), and God knows if I would’ve ever been diagnosed at all. I could’ve died in my sleep. Either I got suffocated or who knows? I had a large tumor. But I feel that I’m meant to be here.”
She hears that from other people as well. People enjoy her presence and the thoughtfulness she brings, and they often tell her things like, “I’m so glad that you were in my life today. I’m so glad that I had the opportunity to help you,” or “I’m so glad that we hear your thoughts.” She feels she is here for a purpose. Now, with her experience with cancer, and with her faith, she hears things differently than before. For Amy, the meaning is there, and it is all around.
It is an eternal meaning, and it has always been.
No Major Philosophies
I may not live for much longer, and I need to know the Truth. Not this or that truth, but the Truth!
That was how I felt in the period immediately following my diagnosis. I had pushed the significant questions about the meaning of life to the side while I had been busy living and learning. But now I didn’t have much time left to defer those questions anymore.
The urgency was immense.
I wished there would be one way to know. I wished there were something that would take me to Truth like a shot from a pistol, to use Friedrich Hegel’s words. I wanted that kind of path to truth: fast and secure. Having urgency does not, however, change the rules of knowing.
Just because the person wants to know and wants to know now does not make this knowledge happen. If anything, with the urgency comes hurried attempts at understanding, and those are often blind or misguided. I had the belief that because I had little time left, I needed to find the masterpieces of humanity’s work. I needed to take them in so I would understand more.
Many would argue that philosophy reached its peak with Hegel, who is my second favorite philosopher, so I picked up Phenomenology of Spirit. In the book, Hegel lays out the stages Spirit moves through on its path to Absolute Knowledge. And that is what I wanted—to know the Absolute. I thought if I could traverse this path, I would arrive at knowing.
I read the book once, then twice, and then five times. In the end, Hegel disappointed me. He did not give me what I was after, Truth. However, he did liberate me from many old habits of the mind, such as the search for a mysterious path to knowing. Upon reflection, he also freed me of my futile pursuit itself! Hegel taught me that it is only with labor and by tarrying with the negative through a formative experience that I could know more.
Hegel also saved my life. If rather than picking up Phenomenology, I had picked up a book of faith, I would probably have been in a different place. I wonder now what I would be writing here in that parallel reality. I can imagine that I would probably be writing “(fill in the blank) saved my life.” We often have certainty in what we believe regardless of whether or not it has truth.
Hegel saved me, but those who read Hegel understand that you could get lost in the dialectics. Are all those opposites the same? I would say no, they are not. If I did not find Truth in the end, is this word, truth, even meaningful? Yes, the word truth is meaningful, and there is better truth. I learned that, however, not from Hegel, but from another philosopher named Jürgen Habermas.
Habermas, a German philosopher, is my favorite philosopher of all time. He is still alive and just turned ninety. And he continues to be one of the most influential philosophers of our time. I had a dream once that I was having coffee with him, and we were chatting about philosophy. I asked him about my third favorite philosopher, Emanuel Kant, and whether we can still view as valid what Kant had said about the impossibility of knowing God in himself.
Habermas did not answer, and the dream ended.
I wish I could have coffee with Habermas, and I am writing that in this book so that maybe he will read it and help make it happen.
With Habermas, I came to realize that I will not be able to have a philosophy that makes sense of everything. I will not find a system that can explain everything once and for all. While Habermas was not the first to say that, he was, for me, the first to elaborate a framework of understanding that was urgently needed.
While I may not reach the truth, I can continue to work toward understanding others. Habermas gave me a framework for judging truth, rightness, and authenticity. I needed that framework to have these conversations with others and to know about myself and about them. I need it still so that I can seek better truth, better rightness, and more authenticity.
I reflect now and wonder if I would still be able to live with meaning without those elaborate frameworks. Do we still need philosophy?
Other participants chose not to explain meaning by referring to major systems of philosophy or religion. This is where James came from when he reflected, “I do not have any great amazing philosophies about life after death.” For him, it is merely this life and only this life.
Ashes to ashes, and dust to dust.
James did not want to go for meaning that is beyond the immediate. As he puts it, “I just want to be around for as long as I can to continue helping others and enjoying life myself, which I do.” James loves traveling, photography, playing chess, kayaking, and hiking, and he does lots of things that he enjoys. He recognized that some might see this as shallow, but that is all right. James would accept the argument that people are just shallow, and he did not want to go into this “old discussion.”
James was then sixty years old, and when he was diagnosed, he was fifty-seven. He had been a dentist since the age of twenty-one, first in Australia and then in the United States, and had retired. He had enjoyed doing dentistry for patients who needed dentistry. He saw clientele from a low or middle socioeconomic demographic. “It wasn’t like cosmetic dentistry,” he said. Rather, his work was “functional dentistry that needed doing.” In other words, as he put it, “I wasn’t doing bullshit dentistry.” It was good, gratifying work, and he has no regrets about it.
James is also an immigrant who did and still does good things for the community, whether in his work life as a dentist serving those in need or in his retirement, when he leads work in advocacy and support groups. For him, you do not need major philosophies to explain why this is good and right; you can do it without thinking much about what it means.
Brandon did not find an easy answer to the question about meaning either. He said, “That’s a hard question,” and then he went silent for a while before pointing out that people may think things happen deliberately for them or to them, but that was not how he saw the world.
I guess I don’t really look too hard for meaning. I don’t feel like anything that happens to me, whether it’s good or bad, is something that someone or something has deliberately meant for me or has done to me. I don’t know. I don’t know if I really look too hard for meaning in things, if that makes any sense.
It did make sense. Brandon was forty-eight years old when we talked, and he’d had the disease for seventeen months. He is married to his wife of eighteen years, and they have two daughters. At the time of his diagnosis, their daughters were sixteen and thirteen. He worked full time in the logistics industry. He has a bachelor’s degree in international relations with Spanish as his major, and he also has a master’s of international economics and management he competed in Italy at a graduate school in Milan. He explained
My upbringing was a little bit different in the sense that both of my parents were diplomats for the State Department. So, in my childhood, we moved like every two or three years to a different country, to a different posting. So we moved around a lot.
He grew to love traveling because he experienced different places and different cultures. When you travel around the world, you can find yourself invisible in an ocean of people. You then tend to see the world as having a reality and rules of its own, rules that often do not revolve around the person. It is hard, then, to maintain a view of the world that is centered on yourself. And having no such view can liberate you from the desire to explain things as intended for or directed at you personally.
Living in a foreign land can liberate one from viewing oneself as the center of the meaning of everything that happens around them. Things happen, for us or without us, and we are just there.
Not very far from this was Emily’s position. For her, life’s fairness is not about the person being immune to experiencing adverse circumstances. Emily puts it this way:
I don’t think life is fair. I think that people get sick and that people have adversity. Yes, people don’t always get to be as healthy as they would wish to be, and people have a lot of stuff like cancer as well.
Emily is a forty-six-year-old humanities professor who was diagnosed four months before our interview. She is married to another professor, of humanities and literature, and together, they have two boys who were eleven and fourteen at the time. They live in a college town that is “very typical upper middle class in the sense of a privileged sort of life.” Life for Emily had been about balancing her work in research, the kids, service, and her students. Her hobbies are cooking and “lazy gardening.” She takes walks, and while not an athlete, she is physically active. She bikes for transportation, describing herself as “extremely environmentally conscious.” She also goes to the farmers’ market, cooks vegetables, and has a sweet tooth.
Emily is aware of her privilege. She is mindful that many people do not have what she has learned to not take for granted and views as a privilege in our unjust society. She explains,
I have cancer, and we’ve got so much going on, which is true, but I’m not worried. Like, no one’s turning off the light on me. I’m not losing my health insurance. My house is safe. Nothing’s being repossessed. I’m not worried about the day-to-day. I’m not worried about my children’s safety. So I’m worried about things like, “Oh no, this one didn’t make the soccer team, and now he’s kind of sad. I hope he joins the debate club.” I’m not worried they’re going to be unsafe.
She is aware that in this life, because we are human, people do get sick. If we view life from a social perspective, in her view, it is unjust not because people get ill but because there are people with privileges, and there are people with none. Looking at life as a part of nature means it is not about fairness. Things happen. Still, our society is not just or fair, and this social injustice could be something to call out as in need of change or as a reason to be angry.
Mary took another stab at the issue of thinking it’s not fair. She looked around and found people with problems and struggles all over the place, and that made her think that “Everybody has their own shit that they deal with. My problems are not any better or any worse than what somebody else might have.”
One may not be in a position to say it isn’t fair if they listen to the stories of struggles that other people experience. I liked what Mary said, and it is not hard to see how much all people, we and others, struggle every day. The only exception would be to live with no adversities.
Mary is forty-six years old and was approaching her third year of survival when we had our conversation. She is married and has two boys. Six months before her illness, they were moving her oldest son into his dorm, and the family was getting used to life as a family of three instead of a family of four. Her youngest son was passionate about baseball, and their lives revolved around baseball at that time. She was a board member on their area’s Little League.
She also worked full time as a commissions processor at a financial broker-dealer in the area. She had worked there for four years before her diagnosis, and she loved her job, especially “going into work, interacting with not only my coworkers but with the representatives that we got with through the financial industry.” She saw herself as continuing to move up in her job. She was taking on more responsibilities and had gotten an excellent raise.
Being at a point in their lives where they were starting to think about what they wanted after their youngest left home, Mary and her husband made a plan that once their youngest son graduated from high school, they would put their house up for sale. “We wanted to live on a lake,” she said. They were starting to do things around the house to get it updated before they put it up for sale. They lived in the house Mary had grown up in, and they had lived there for over seventeen years. Mary noted, “It was supposed to be our five-year home but ended up being our seventeen-year home.”
Life does not always go as planned. But if we look around, is that not the case for everyone? You may not need elaborate philosophies to make sense of things. Philosophy can help, though, when we bring it down to the level of day-to-day conversations about understanding meaning.
Here, I am using “meaning” to refer to that which we understand. Meaning does not have to be elaborate, and philosophies do not have to make sense of everything at once. Science and modern philosophy have taught us to give up on understanding the totality of one system.
Still, the person can carry on with the idea that she needs or wants to carry on. And philosophy can help, although many individuals can do the job without sophisticated philosophies.
When we step out of seeing ourselves as the center of the system of reference, and when we compare our lives to others, it may be useful to avoid notions like fairness where there is no place for thinking of fairness.
It is absolutely not fair that some people have no access to health care. It is not fair that marginalized people cannot attain in life what people with privilege do. But this framework does not apply to cancer afflicting someone. As a random biological event, cancer can affect anyone, and it takes someone believing in their extreme exceptionality to justify feeling that they should not be affected by cancer when everyone else can be.
It is, however, fair to expect that we should be treated with care when we suffer. What is unfair is that people do not receive the care they need. And you do not need a major in philosophy to know that.
Meaning in Knowing
My mentor was skeptical when I told him that I was pursuing a PhD in Education. He said, “After you obtain a terminal graduate degree, people stop looking horizontally at the letters next to your name. They look vertically at the experiences you had and the work you did.”
I could not argue against that. I still went for the degree.
My program of study was inquiry methodology in social science. The program is about learning how to methodically ask questions and how to research the matter at hand. The focus is on social sciences, and the emphasis is on the theory and practice of research. It is as much philosophical investigation as it is empirical questions.
At that time, I was struggling with a condition called inflammatory bowel disease. I was worried the disease could spin out of control and cost me part or all of my colon or that, with time, it could develop into cancer. As a physician, I was afraid that my illness could make it impossible for me to be a doctor, and I wanted to be prepared for a new identity.
What was most important is that I had the desire to know and understand. I was not, however, going after this or that specific piece of information; I simply wanted to know in general. I explained to my mentor that I was after an unknown answer to an unknown question, and I was hoping to find the question and search beyond what is known. He did not buy into that. But without that training in inquiry, I would not have been in a position to do the research that is the foundation of this book, and I would not have been in a place to talk to the people whose stories I share here.
What I learned in school, I have brought to bear in what I am now writing.
I interviewed people who also wanted knowledge and found meaning in it. For example, there is Lisa, who advocates that you do not need to be religious to think of meaning. Meaning for her has to do with knowing. She explained,
I have a tattoo on my back. It’s my first one. I didn’t get it until after my diagnosis, and it’s straightforward. It’s just a line that says, “All knowledge is worth having,” and that’s pretty much it.
That is the heart of it for Lisa. Meaning is in seeking knowledge. By that, she doesn’t mean only one type of knowledge. She says, “I would never say that I have so much medical knowledge.” She enjoys history. She enjoys anthropology. She is not religious in any way, but she explains, “One of my favorite subjects is comparative religion.” She looks at it from an anthropological and cultural point of view, not so much a spiritual point of view. Lisa enjoys watching documentaries and shared, “I like comparing and finding meaning across cultural differences and through historical timelines.” It is coming to know, and learning is the way to develop meaning.
Lisa was sixty-five years old, and she was one month shy of three years since her diagnosis when we had our conversation. Lisa had been diagnosed “in a year of transition.” Everything came up quickly. Two years prior, she had been working at a job that had an intense commute, spending almost three hours in the car every day. She’d had the job as a literary sales manager for a newspaper for twenty-five years, but about two years before her diagnosis, the job started to fall apart. She said, “It was, of course, that Amazon took over everything.”
She found herself a commission-only sales manager for a very well-known newspaper, but all the bookstores she worked with were going out of business. “My income plummeted from a very nice income to a very lousy income, and the company was starting to go under.” Then, at that juncture, her mother, who’d had malignant melanoma, passed away. “They never found anything to help her; she died very quickly after diagnosis.”
Her mother left a little bit of money, which allowed Lisa to quit her job, and she went back to school to pursue a certificate in health care advocacy. Her husband has a decent job, they had good health care, and her son was in college on a scholarship. “So, it was pretty easy to go ahead and just go to school.” She got her certificate from a prestigious institute, then “everything happened at once,” and that’s when she was diagnosed.
Cancer, knowledge, and meaning all came together for Lisa.
Lisa is not the only one who found refuge not in faith but rather in books. Another participant who was in a similar position is Debora. Here, she explains:
See, I’m not religious, and a lot of people get comfort from their religion, from believing in an afterlife and that once you die, everything is going to be fantastic, and you’re going to see people and blah, blah, blah. I don’t buy into that.
Instead, what Debora found helpful was bringing her attention to day-to-day subjects like “reading some books.” Debora was sixty-four years old and had been diagnosed for a little over two years when we had our conversation. Her significant other is her high school sweetheart. Back in high school, they went together for about two and a half years. Through the years, they had kept in touch off and on. They had both married and had kids. She talked about when they got back together:
So about ten years ago, he was divorced, I’m divorced, so we met for dinner, we start talking, we went on a trip together, what not, and then we became a couple. So we’ve been together for ten years; we have a good relationship and a good life.
Debora was a marketing manager for a big consulting firm that was going through a reorganization and merger. The company was downsizing, and Debora was in the middle of being laid off. When she learned about getting laid off, she was at first “pissed off,” but then she thought it could be good because she would be getting out of a stressful job and would get an excellent severance package. In the end, things were good, and that was that.
Still, it is hard for her to accept that everything will always be fantastic or OK in the end. Her life has had many twists and turns that challenge such certainty and that taught her otherwise.
Not having faith does not mean the person would be suffering from uncertainty and constant doubts. For Cynthia, finding the meaning is not a struggle because she understands science. She explained,
I had never really struggled for meaning. I find it interesting enough through science and nature. Those are the things that give my life meaning. I’m not a religious person, so I don’t have any state-based support, and I don’t believe in an afterlife. I don’t believe in heaven or hell. I don’t believe in any of that. I don’t believe in God. So, really for me, it’s all about the here and now and creating the most of what we have at the moment.
Cynthia was fifty-two, and she’d had her diagnosis for twenty-one months when we talked. In the years leading up to her diagnosis, she had divorced her husband, so it was just her and their three children. At the time of diagnosis, she was in a new relationship with a woman who is now her wife, and things were good.
She had gone back to work doing seasonal jobs, in the winter as a tax preparer, and in the summer, she’d recently returned to a previous career doing gardening and landscaping. She had “a nice balance.” They were living in a new house and were very active and traveling frequently the year she was diagnosed.
Her frame of meaning-making had been tested before when she lost her mother to lung cancer. She shared,
I was older than my children likely will be when they lose me, but I still feel the loss of her every day. Not in the way that’s like it crippled me.
It is not loss that would make Cynthia sit in mourning or grieving because her mother is present in her life every day. Cynthia notices her mother in the things that she does, the things that she says, and the actions that she takes. “My mother is there when I wrap a Christmas present because she taught me how to do it so beautifully.” It feels to her as if her mother is “moving through me every day.”
When she imagines her children after she dies, she feels hopeful that she will also be with them. Cynthia explained, “So when I feel hope for the future and for my children, I feel that they’re always going to have me with them as they go forward through life.”
For Cynthia, you do not need this or that religion, and you do not need to know that you will be OK. What will happen to her has already been modeled when it happened to someone she loves—her mother.
Our lost ones still live with us in the memories we have here and now, not beyond this life.
The position on meaning, on life and what is beyond, and the interest in the here and now is salient also for Andrew. With the faith of a believer, Andrew asserts that there is nothing out there waiting for us. This is our one and only shot. He explained,
I don’t believe in an afterlife; I don’t think there’s something out there waiting for me in a better way after all of this. This is my one shot at the world.
This is not a position about a metaphysical question. For Andrew, this matter is relevant to day-to-day striving. He explained,
I am going to try to maximize my time here, and that means I’m not lying down and taking this. This cancer is not going to take me quietly. I’m going to make every reasonable effort to stay alive, and that means doing drug trials and making sure I understand what the latest treatments mean and getting multiple stacks of opinions, as I have done, and continuing to see other doctors; just trying to stay out of the curb. So, that’s one way I deal with it is to say I’m going to continue to fight, and I’m going to do it.
For Andrew, the matter ought to be taken into one’s own hands. The questions are not theoretical but practical: what is it that I would do here and now? They are also not metaphysical but empirical questions: what is the best way to keep me alive and optimize my chances?
Andrew was sixty-one years old and had cancer for eleven months when we had our conversation. Until he was diagnosed, he was working for a computer company as one of two people running the legal department. There were 500 people in his group. “So I had a big job; it was worldwide. I spent a lot of time traveling, a lot of time with legal issues.” For over twenty years, his life was “very work focused.” He was planning on retiring and had almost retired a few months prior, then chose to delay it, before he became ill and then had to retire.
Andrew is a subscriber to the New England Journal of Medicine, the journal with the greatest impact in medicine, so that he can have access to knowledge. He wants to be able to converse with his doctors, and more importantly, I think, he wants to know.
When we sense a boundary of time, our curiosity awakens, and so do our desires for knowledge.
It is with curiosity to know that we construct meaning.
Meaning in Being with Family
I received a wedding invitation a little over a year after my diagnosis. My nephew’s wedding was planned for six months after the invitations were received. I wanted to be there, but six months is too far in advance to plan for someone with Stage 4 lung cancer.
Would I be here? Would I be strong enough to fly?
It is now months after the wedding, and they are pregnant. I made it to the wedding, and I am now looking at family photos. The couple gave the family a joyous reason to all get there and be together. I traveled the furthest, from Seattle to Malmerspach, a small town on the northeast side of France. I saw many of my relatives as well, some of whom had escaped the war in Syria. Like many of them, I did not take for granted that we were there.
It was good. It was a time to feel the community and family love. The memories will always be there, and so will the hundreds of photos. I was with my girlfriend at the time, now my fiancé, Crystal.
With family, there is unconditional care and love. When with family, all time is well spent. The family we are born into is not a personal choice. I came to life as the youngest of nine siblings. But my siblings have chosen to bring into this life, so far, twelve nephews and nieces. I have decided to be with Crystal, and I sought our love. The sufficient and necessary condition to love and be loved is to find someone who loves you and allows you to love them. That is what I believed, and for me, that was Crystal.
However, the question of having children is a difficult one and will always be a challenge. The child I could bring to life does not have a choice, and the moral burden is all mine. I will grapple with the notion as I have never had children and do not have any personal experience that resembles having my own. So the matter is not resolved or understood for me.
Among those who have children and families of their own, they find in them the most meaning. Linda explains how her children are the meaning of her life, although she had at first also been unsure how to answer the question about meaning. She explained,
What comes to my mind is that I have three kids. I didn’t have meaning in my life before them; they are the meaning in my life. They’re my motivation. They’re the reason that I do things.
Linda was forty-one when we had the interview, and she’d had the diagnosis for thirty-two months. She has three girls and was diagnosed about a year after the birth of her third daughter. She described it, “So I still had a nursing baby when I was diagnosed. About a year before that, I was having a baby.” When we talked, her daughters were five years, three years, and one year old.
Linda is a clinical psychologist by trade, and she has her own practice. She was happily married and “trying to manage the demands of three little kids” as well as her own business at the time of her diagnosis.
Regarding the kids, Linda says they are “wonderful, full of energy.” The oldest is now going into the third grade. “She is not much of a student. She’s not that interested in school, but she is all motor. She loves to play. She loves to run. She never stops moving, and she does anything that she can. Her big activity right now is that she does parkour, so she keeps us busy with her moving all around.” Linda says that her second daughter “loves studying; she loves reading, and was a very proficient reader before she went to kindergarten and has always loved to just be in front of a book and learn everything that she can.” And there is her baby. “The baby loves being a baby. I think she missed out on some of her babyhood because I was going through all that I was going through, and so now, everyone extra dotes on her, and she really appreciates it.”
Things go by rapidly when kids are young, and the memories blur. Linda remarked, “You know, it’s such a blur when you have little kids. It’s all just sort of a mashup. My oldest has never really been a good sleeper, and so parents—we didn’t get a lot of sleep, so it was a lot of just making it through the day. You know, getting the school lunches prepared and finding a way to get everyone dressed and out the door in the morning.”
Linda enjoys a lot of family time and just snuggling. “We’ve always been a family that likes to sort of snuggle up on the couch and watch a movie or go to whatever sort of festival is there that day. We like to spend time together doing whatever it is that’s available to us that day.”
She met her husband about twenty years ago when they worked together. With Linda’s cancer diagnosis, life for the couple has become “really just one day at a time.”
Having children also made Elizabeth choose how to deal with her cancer. She wants to keep going because she wants her kids’ memories of her to be good ones. She explained, “The kids are OK; and if the kids see me OK and that I’m doing stuff, they will be OK.” Elizabeth has put effort into maintaining her children’s lives as they were before her diagnosis. She told me, “Their lives haven’t changed. They are getting to all their activities, and so everybody’s OK.”
She does not want to think about the illness and its prognosis. She explained, “You know, it doesn’t help for me to dwell on what could happen and how long I have because I don’t know how long I have. Nobody knows how long I have. I know that I have a lot of hope about the mutation I have and who knows?” She had just met a fourteen-year survivor with her same mutation. “So who knows? And I’m not even at year one yet. I haven’t even gone there, and I have no idea what’s gonna happen, so I need to keep going and keep their lives whatever they are right now.” Elizabeth also puts effort into making sure the memories are positive. She said, “I want their memories to be of me living with it and going on, so I want their memories of me to be good ones and not of me in bed and sad that I had cancer.”
Elizabeth was forty-three years old when we talked, and she’d had her diagnosis for twelve months. She was an airline pilot but had stopped working over a decade earlier due to an unrelated medical situation. She was a mom of two children and prided herself for living in a supportive community. Before her cancer diagnosis, she was very active with her kids and in the school and their community.
Her eight-year-old son has high functioning autism, and Elizabeth is very involved with his life, his therapies, and all of his needs. She also has a one-year-old daughter who is “typical developing.” Her husband, also an airline pilot, is home half the month, “and then he’s gone half the month. So he works a week and then he’s away the whole time, and then he comes home for a week, and then he’s away for a week, and then he’s home for a week.” Her life had been revolving around the kids before cancer, and it became even more about them after the diagnosis.
Having a family got some participants into a specific frame of mind as it relates to their emotions. Michael voiced it, “I’m not afraid to die; I’m afraid not to live.” That would not have been the case for Michael if he did not have his son. His son is an inspiration and a reason to be alive. He elaborated,
Well, I think my frame of mind would certainly be different if my son weren’t here. Without him knowing it, he is my main inspiration. I want to see him grow. I want to see him learn. I want to be a part of that. I need to be a part. So that’s a big driver in the motivation here.
Michael, forty-three years old, was diagnosed nine months before our interview. Going back a couple of years before his diagnosis, when his son was about six or seven months old, he was working for a construction company. He had been, as he put it, “relatively miserable with my job for several years.” He was trying very hard to find a way out of the industry and interviewing at various other jobs he thought would be good for him. Unfortunately, he wasn’t able to find that for quite some time, so he started a city job.
His son and his wife have become Michael’s focus. Although he has two older daughters from a prior relationship, they live in another state. He enjoys taking his son to the zoo and going to the park down the street. He grew to enjoy his job, especially doing things for the public. It became “a matter of pride working through a city and figuring out the ins and outs of how a city runs.” Also, with his daughters being much older, Michael’s son was “a brand new start.” Their son is his wife’s only child, and Michael remarks that “they’re my life, as if it started over in regard to being a dad, which I have enjoyed every bit of.”
However, along with the joy and meaning in family, there is another side to the matter. For someone with cancer, having children brings an existential ache. For Linda, it is so troubling that she has wished she had not had children now that she has developed cancer. She explained,
If I had known that I was going to have this disease and be taken from them, I probably would not have had them. But I didn’t know that. Now, here I am. I have to do everything that I can for them while I can.
With her children in mind, this means that she ought to do everything for their sake. With family, there is meaning.
Also, there is pain.
The magnitude of our struggle when we think of our family reflects how meaningful their existence is to us.
Service Is Purpose and Purpose Is Service
“I’m a family doctor,” was the first thing I would say about myself when I met people in social settings. The second thing was that I am a university professor. I took pride in serving others and found meaning in being in academia.
When I was diagnosed with cancer, one of the hardest things for me was losing the identities of doctor and teacher. Beyond not living long, what troubled me was that I wasn’t sure I would be able to do what is meaningful to me while I am still alive.
At that point, I could no longer serve in both of those capacities, and that made the experience particularly hard. I took three months off from working as a doctor before returning on a part-time basis, and everyone understood. Announcing that I was diagnosed with Stage 4 lung cancer was a good enough reason for my colleagues to cover all my duties. But not being there to fulfill those duties caused a crisis in my identity.
As I grappled with how to reconstruct who I am, I thought I would want to spend the rest of my life doing what I—and only I—could do.
But this is hard to figure out.
What is it that any individual, and only that individual, does or can do? Obviously, to family and friends, the person can be valued as they are, and no one can replace them, but in other spaces, people are often thought of as interchangeable. Could there be a place for the cultivated authenticity of a person who serves and participates in the conversations, bringing what only they can bring?
My training as a doctor has given me perspectives and insight. I pursued graduate training in a master’s program and then finished a PhD to learn how to understand things. But then cancer gave me perspectives I did not have before.
The illness is a real teacher. It led me down the path to my authentic self more quickly. I happen to come into contact with the experiences of other cancer patients who are, like me, grappling with similar crises, and I realized that my experience as a cancer patient is adding to what I was able to contribute before. It was almost like going to school again to learn new ways of thinking.
The experience of living with cancer was transformative.
Now, I can serve better, and I can do things for others in ways I was never able to before. To my patients, I can be the doctor who also understands their experience because he is a patient himself. I can serve communities of patients as a researcher who understands their experiences inwardly because he is also a member of and belongs in these communities.
I found purpose and authentic conversations in serving others and in being with others as they pursue what is of value to them and what is right. This is also what many of my cancer friends thought. Some found meaning in the volunteer opportunities where they came to serve other community members. Nicole puts it in a bold statement:
Purpose is a service, and service is a purpose.
For her, this is important in terms of “basic humanity.” It is how she sees the world and being human. Nicole was fifty-five when we talked, and she’d had her illness for eleven months. She describes herself as a “late career academic.” She had been teaching writing, literature, and film in an academic setting for nearly thirty years. Her career had been “pretty typical and involved publishing, attending conferences, and serving on and chairing committees at my institution.”
She had “a very, very busy life.” She would rise pretty early, about five or six in the morning, take care of some household things, and then take the dog for a walk. She lived close enough to school that she could walk or ride her bicycle to the campus. There, she would handle all her correspondence, and get ready for the several classes she usually taught every day, preparing the materials she needed and reviewing what she was teaching that day. And in between, she would meet with students and attend committee meetings. At the end of the day, she generally tried to go to the gym and exercise a little bit. Then she would go home, make some dinner, watch a bit of news, grade some papers, and “collapse around 11:00 p.m.”
For Nicole, the meaning in life is simple, “If you can do something for someone else, then you should.”
The desire to serve is also what made Sarah think of becoming a coach. She has seen, in her experience of health care, how professionals come to help people who are struggling, and she admires their commitment. For Sarah,
Finding meaning was the driving force for why I’ve decided to go into coaching, because I felt so supported when I was sick, by not only friends and family but also the health care professionals I had along the way. I’m like, “Wow. There are a lot of people out there who could benefit from some support. What can I do? How can I help other people?” Because that’s going to make me feel better, too. That’s going to get me out of always thinking of me—“How can I help other people?”
She laughed as she mentioned getting out of always thinking of herself. Sarah was forty-three years old when we talked, and she’d had her cancer for nine months. Her background is in journalism and publishing. She said, “My entire career, I’ve been in some form of writing or research or publishing.”
She had found a job as a salesperson with a self-publishing company. Authors of any genre wanting to publish their book and who were willing to invest in the publishing program would use her company. She is also a published author and thought it was a good fit. But then she was let go from her job. She found another similar job, but it paid commission only. When she was diagnosed with cancer, and after her early period of recovery, she decided not to go back to the commission-only job. She laughed as she explained to me, “Dudes, I don’t have time to just keep working this job without getting paid. I need a real job.”
Her dad helped her discover that she could go on disability and go back to school, and she is getting a certificate through a coaching school. When we spoke, she had just finished classes and was studying for the tests. The following month, she would be sitting for the examination and getting certified. She explained,
I decided if I only have a couple of years left on this planet, I’m going to do what I want to do. I’m not going to work at Starbucks. Nothing against Starbucks, but I want to do something meaningful to me.
When we are helped, we come to realize that we, too, can help others. The act of helping and serving gives us meaning. Cancer patients also realize the struggle of the person who receives a new cancer diagnosis. They have gone through that experience themselves, and because they realize how difficult it can be, they want to make the journey more tolerable for other survivors.
This is Stephanie explaining how she finds meaning in talking to other survivors:
When somebody is newly diagnosed, they’re so scared. Being able to say to them, “Yup, been there, done that. I know how you feel. They gave me six months, but I’m in remission,” I’m here to tell them it can be done. Because I know what that feels like, too, to be that new person, and wonder what’s going to happen. And it’s not that I don’t wonder that, but I just keep fighting.
Stephanie feels she can help the person who is newly diagnosed wrap their head around the diagnosis so they can realize that it is not the end for them. She knows from her experience that there are treatments and options. She reflected on her own experience when she was diagnosed and how she started to search for any information:
I googled everything in the beginning, and the survival rates aren’t great, but the studies are really old, and that’s one of the other reasons why, if I can get involved in any studies, I’d like to do that.
She knows from personal experience that this is scary, and if she can help others not be as scared as she was, she will do it. She understands others’ suffering because she suffered, and she does not want others to suffer in the same way. Stephanie was thirty-seven when we talked, and she’d had the diagnosis for thirteen months. She explained about her life before cancer: “It was always my dream to have my own children, to get married.” She is a nurse. A year before her diagnosis, her brother, who has an intellectual disability, went into respiratory failure and was put on a ventilator. Being the nurse in the family, she had him moved to live by her in a skilled nursing facility. Her passion and dream job were in the field of intellectual disabilities, and that is what she was offered in her first job.
On a typical day, she would go out and do assessments and medical screenings to see what the patient’s needs were. She also has an interest in behavioral health, and said, “If someone would be difficult psychiatrically or neurologically, I would be the one to go out to do their assessment.” She also did follow-up screenings and educated facility staff about the illness processes the patient was experiencing. She noted, “If the individual wanted to learn about it, I would educate them.” After cancer, Stephanie took a new job, and now she is a case manager. She works with patients who have chronic conditions, and she chooses the ones with cancer.
When we talked, she was still relatively new to the job, having been in the position for only a few months. She does not tell her patients about her diagnosis because health care professionals are advised to separate and contain their personal experiences. However, she feels differently toward those with cancer. She explained,
I do feel a different connection with them, and I find myself probably trying to reach out to them more. When they’re having a bad day, I like being able to reflect with them, just not saying, “I know what it’s like because I’ve been there too,” but just phrasing it a little bit different.
Stephanie knows that many of her patients who have other chronic conditions struggle with loss as well.
Heart failure is a big one among our patients. I would think with any chronic condition, there’s still some sense of loss because there are things that you can’t do that you used to be able to.
Stephanie understands better now the experiences and struggles of these patients.
You do not need to be in health care to serve. Many of the participants found meaning in returning to work, volunteering, and helping others. These not only give a sense of purpose but also put us in touch with what “normal” people do. My friends here would say,
It is fun, and it is good.
There is also in it the human interaction with people. Service means doing work that incorporates one’s talents. Whether the person is doing marketing, advertising, or any other job, it can be fun and can be meaningful when that element is included. It is also doing something that we enjoy and something that we are good at.
There is meaning in the interactions with people at work and in helping people solve problems and teaching them something. It is fun when you see that light bulb go on, and you know you’ve created a connection for them or an understanding. That’s where my meaning comes.
It is just continuing to live a good, intentional life.